It was a long week with Renny. She left the hospital with two prescriptions: phenylbarbital (anti-seizure) and amoxicillin (antibiotic). The first few days after returning from the hospital were…awful. She was so irritable, uncomfortable, whiny, flailing herself around, needing constant attention, oh, and diarrhea…just not good…and just…high maintenance…constantly. And obviously we felt horrible that she was feeling so bad inside. We called the hospital on Sunday to explain our concerns; they told us to call neurology on Monday if she wasn’t any better. We called neurology on Monday to explain our concern; they told us to call her pediatrician on Tuesday if she wasn’t any better. We felt that we were just brushed off both times and were not very happy with that. But, we waited until Tuesday to call pediatrics and talked with Renny’s nurse. Finally, someone who was interested in our concerns. After listening to everything, she talked with the doctor, who talked with the urologist, whom both decided that Renny did not need to be on the amoxicillin, something about the extremely minute amount of bacteria in the culture and how it may have just been a contaminate and not an infection. In any case, we were glad to take her off of it. I had amoxicillin once many years ago and had extreme stomach cramping from it. It was theorized that perhaps this medicine was a main culprit of her irritability and most certainly the diarrhea.
Wednesday morning arrived, and Renny woke up….an…almost new person. Though still not herself by any means, she was noticeably less irritable, and a little happier. Though relieved that she was better, we were still concerned because she still was quite far away from her normal self. Still quite high maintenance, needing a lot of attention, especially because she wasn’t just sitting down and playing like she used to. She seemed somewhat happy when moving around, climbing on the couch, rolling around on the bed, etc., but that’s it, and that’d be find except we just really couldn’t be with her moving her around all day!
So, Friday came, along with her neurology check-up appointment. We expressed all of these concerns with the doctor, and of course Renny was as happy as could be in the room, so she made liars out of us! No, they did believe us, and told us to basically give it a month, and if she still seems irritable and/or her personality is still not quite the same, then they can try a different medicine. The reason they do not try a different one now is because there are very limited available/approved anti-seizure medications for children under 3 years old. Phenylbarbital has been around for like 60 years and has much evidence for working, so they like to stick to that one if possible. It was also explained again that it was of great great concern that her first seizure was so long. The neurologist said that they get concerned even after a 15-30 minute long seizure, and also why it is so important to prevent further seizures, by using the medication. Having one seizure brings higher risk of having another, so we need to try to prevent it. When asked about possible damage caused by the seizure, he said it is uncommon, but not a given, and also reassured us that if she had any damage we would have noticed by now. Overall, we think she seems okay cognitively, but with some of her non-usual self behaviors….I guess right now I am assuming (hoping) it’s the medication. When I was in the ambulance with her on the way to the hospital, that’s all I was doing, was praying, praying, praying, that she would not have any long lasting consequence, no damage done to her brain. I found out later that that’s what my husband (T) was praying for the whole time too. She seems to be doing all of the same things as from before the seizure – making her signs, nodding yes and no to questions, yelling at her brothers, playing with her doll, etc. She does act a little loopy at times (!) but again I’m hoping this is the medication.
Since Friday’s appointment, Renny does seem to be getter a little better each day. Again, she is still not totally back to her normal self, but she is starting to need less attention, starting to play a little by herself, and more happy. Again, if after a month these side effects hadn’t disappeared, then they would try a different medication. The plan is, because of her age, to keep her on for 18 months, in which the hope is her brain will “outgrow” this seizure tendency per se. Then they will slowly wean her off over several weeks, to allow the body to adjust. Sadly, after taken off medication, she may have a 50% chance still of having a seizure. This depends, I guess, on the results of her EEG tests. We have to take her to have her first sleep-deprived EEG in a few days. We have to wake her up at 2 a.m. and keep her up until 10:00, when her test is. This will give a “baseline” of her brain activity, and because sleep deprivation can trigger seizures, (which hopefully she will not have one) this will catch the brain action during this state. Or something like that. She will start awake, then hopefully she will fall asleep, and the after a bit, they will wake her up suddenly with lots of flashing lights and stuff. Somehow they will get a “normal” or “abnormal” read from this EEG and then do another one after the 18 month period to compare. If it is “normal” both times, it gives her a better chance of not having another seizure. I think I got it right.
Then, the following week, she goes in for an MRI of her brain, to get better more detailed pictures of her brain, specifically the fluid in her brain controlled by her shunt. This will be good timing, as her neurosurgeon from her birth shunt-surgery will be in town that day, so he can look at the images as well. Not sure if it would be good or bad to find something there.
SO. Renny is slowly recovering…as are we. It’s been a long process. Stupid seizure. Still mad at it. But, we are getting through it. And I am thankful that she IS recovering.
Prayer Requests! For God’s hand in her healing: That Renny would FULLY and SOON recover from the seizure and the side effects of the medication. That she would NOT (ever) have another seizure. That the EEG and MRI have good results. That there would be no other bumps in her road anytime in the near future.